Monday, 20 May 2013

The Pain Of Living; The Pain Of Dying

Some days it is almost impossible to detect, other days it rampages over me like a storm. “It” is the slow, creeping determinism of ALS. Each day is incrementally more difficult and what frightens me now most of all is the acceleration. A year ago I was climbing in and out of my truck, driving to the Arctic Circle, camping in Inuvik, fishing on the Beaufort Sea. A year ago I did not know I had ALS; I was blissfully unaware.

Six months ago I was walking with a cane, struggling with stairs, tiring easily. I could still drive my truck, and drive it I did, but getting in and out was a real challenge; I might add that it was a challenge that I failed at a few times. Six months ago I was still able to lift a turkey out of the oven, grab a few bottles of wine from the pantry, carry my laundry to and from the laundry room.

Now there are times when my fingers are too tired to type and my hands need a rest. I leave my wheelchair only to get into bed or into my chair in the living room. Soon even those things will be more than I can do. My hands shake; I cough; I find myself short of breath after almost every exertion.

The horrible, terrible, awful thing about this disease is that you get the pleasure of seeing it coming, knowing what is coming next, feeling the progression both slowly and quickly. This disease has the pacing down to an excruciating exactness, a timing designed to inflict maximum destruction on the body and spirit. It has an evil, debilitating, destructive approach and there is no release but to die.

I am not ready to give up yet but I am certain I will die. I do not yet want to depart from the land of the living but I will not complain with it comes time to cross the stygian stream. Dying will be a pain; dying will be a pleasure. I am at peace with either outcome, each and every day.

My friend Chris once said that “you will stay in a situation until the pain of leaving is less than the pain of staying”. He was talking about my marriage at that time. Little did he know that he was also talking about ALS. As long as the pain of ALS is less than the sadness of death, I will live. Once the pain of living is worse than the pain of dying, I will leave.

Today, I choose to live. When I choose not to live, please don’t judge me. It’s too painful some days.


  1. Hi Richard, every day I read your blog and everyday I wish I had something profound, helpful, optimistic or just plain amazing to say but I don't. I guess I want to tell you that I think your writing is brilliant. I feel like I am spying on you, seeing straight into your heart and soul. Rarely do people have the courage to share in these ways, to lay it all out there and just say it how it is. I commend you for that. I know I speak for myself but I am guessing I speak for many that the last thing you have to worry about is others judging you on the day you are too tired to carry on. I think people will say you fought a valiant battle each day giving of yourself even when you felt too tired to do so. I don't think you know the impact you are having on others. I find it inspiring, hard to describe really. Keep writing Richard, and when you can't write you can talk and I will write it for you. You are amazing Richard. I feel privileged to be a part (a very small part) of your journey,
    Lori Cullen

  2. Hi Lori

    I am continually amazed that people read my blog. It is the insecurity in me that says "If they only knew what I am really like they would all hate me." Yet many people, even those who know me with all my failings and faults, have been tremendously supportive and helpful, just as you have been.

    I am so grateful for all this support.



  3. Wow. Just wow. Lori has expressed in words what I have been feeling. I don't read every day. But I have read almost every post. I sometimes miss a week or two, then catch up all at once. I have tried to post a time or two, but after typing something in and re-reading it, I have inevitably deleted it without posting. I don't have the creativity to adequately express myself. I will second Lori's opinion that your writing is brilliant, Richard. I am amazed. I regret we drifted apart all those years ago, and I never knew what an exceptional writer you are.

    Keep on blogging. It is a powerful message, and needs to be spread.


  4. Hi Rob

    With any luck we will meet once again before the inevitable outcome of life.